Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

If You Would Have Told Me


Each year, I write a chapter for a book called “Visible Ink,” published through Memorial Sloan Kettering Cancer Center.  The following is this year’s chapter, my 7th published effort with MSKCC.

 

If You Would Have Told Me

Paul Edelman

 

            Of all the side effects that were going to affect my life as a cancer survivor, the inability to have biological children of my own, was the hardest to accept.  If I refused treatment, in particular, the drug that could cause my sterility, I would risk achieving remission, or worse, die.

            If you would have told me, that in spite of choosing treatment, that my life would be blessed not once, but twice, by travelling around the world to bring into my life through adoption, two beautiful daughters…

If you would have told me, back as a 22-year old, just diagnosed with Hodgkin’s Lymphoma, that I would have someone standing in front of me, asking for my daughter’s hand in marriage, because I am a traditional father and my daughter deserves that respect, …

            If you would have told me, when I had completed treatments and was declared in remission, that I would be playing a role in planning my daughter’s wedding, …

            If you would have told me, nearly twenty years later, as I lay on a surgical table, about to undergo emergency heart surgery due to late developing damage from my cancer treatments, that I would be standing in the back of the church, just staring in awe at my daughter, beautiful and dressed in white, as she began the next stage of her life, …

            If you would have told me, five years after that, as I was being rolled out of my home, at 3am on an ambulance gurney, dying from a full blown case of septic pneumonia, another late developing result of my cancer history treatments, that I would be walking my child, my daughter, now a woman, down the aisle to someone else who was going to be entrusted with taking care of her, …

            If you had told me that after everything else that I had experienced due to late effects of my cancer treatments, that I would have no choice, when asked, “who gives this woman to be married?”, my daughter would be counting on me to answer, “her mother and I do.”  At that moment, you would think that going through cancer and all of my other experiences would have been the hardest thing I have done.  Wrong!  I did not want to let go.  Reluctantly, but not begrudgingly, I responded “her mother and I do.”

            If you had told me that as the decades of my survivorship passed, that I would be able to dance the special father/daughter dance, I would tell you, time is not kind to the mind of a cancer survivor wondering, “how much longer will it last?”  Yet here I am, a microphone in my hand, dancing with my daughter to a song that I not only picked out for her, but will sing to her, a lullaby that comforted her to sleep as I rocked her and sang to her, “Turn Around”.

            If you would have told me, that I would be holding my first grandchild, me undecided about what I wanted to be called, “pop-pop”, “grandpa”, “poppy” or even a name my grandchild would just give me, I would have to tell you, that a long time ago, as I was introduced to Memorial Sloan Kettering Cancer Center Survivorship Clinic, that is exactly what they told me would happen, that I would see this day.

            There is only one catch, none of this has not happened yet.    

            I do not know when this day will actually happen.  I have two daughters and I cannot wait to go through this twice.  I am only more than willing to do so.  My daughters are in their teenage years, still in school.  I know this emotional time for me will rapidly approach.  But on the calendar, I have plenty of time.  One thing is certain, I know that they want as much of a future with me, as I do with them.

            If you would have told me, when I was diagnosed thirty years ago with Hodgkin’s Lymphoma that I would even have a future, let alone, two of the most important people in my life, my daughters, and survive long enough, to see them get married, and have children of their own, I would have said “I will see those days.”  I have the right people behind me; doctors, nurses, my mother, my closest friends, and of course, my daughters.  With support like that, there is no doubt.

            I will have that chance, to sing “Turn Around” to my daughters one more time, but also as I rock their children in my arms, sing “turn around, and you’re two, turn around and you’re four.  Turn around and you’re a young child, going out of the door.”  And I will tell you, “I told you so.”

Advertisements

Happy Forever Day To My Oldest


March 14th.  My grandfather’s birthday.  My niece’s birthday.  But the biggest event on this date for me is the day that I became a father for the first time (of two), fifteen years ago.

This is yet another milestone I am surprised, and happy to have reached.  As a result of treatments for Hodgkin’s Lymphoma, I was not able to have biological children.  And after some scientific assistance, efforts still came up empty.  And then something happened, the country of China, made possible what I was not able to do here in my country of the United States, they gave me the chance to be a Dad.

Of all things that I have done and experienced in my life, there is nothing more important to me, than being a father.  I am blessed with two wonderful daughters who give me meaning every day.

Our family situation is not ideal, nor is the fact that I have so many health issues to deal with.  But that has never stopped me loving them, wanting to be there for them, and being proud of them as they become the young adults that they are.

Times have changed from teaching them to play and read, to teaching them about the importance of choices, and consequences and rewards of those choices.  I have gone from doing what I can to protect them from scrapes and bruises, to now preparing them for the potential career directions that they want to take.

Fifteen years have gone by, way too fast.  As I look back through all the photos (I do that a lot), I still see the little girl that was placed in my arms.  I still hear the distinctive giggle that has not changed.  She is as determined to do things, her way, as ever.  She has a bright future ahead of her.  I want her to have more opportunities than I had.  I would like her to have a better start to adulthood than I did.   Fifteen years is nothing compared to the milestones that are ahead for us, and I look forward to each and every one of them.

 

29 Hard Fought Years


Today is the day I recognize 29 years since I beat Hodgkin’s Lymphoma.  But I feel differently today, than I have my other anniversaries.  While I generally do not celebrate my longevity as a rule, because of the issue of Survivor’s Guilt I deal with (why I am still here, and others are not), as I reflect on this date, I acknowledge the chip I have on my shoulder.

I am not one of those who take the attitude “cancer changed my life for the better,” but neither am I bitter for having faced this beast.  But when I talk about a “chip”, that definitely has defined who I am and how I live my life.  So if I am not bitter at cancer, what, or rather who, am I bitter with?  What have I finally realized is driving me to keep surviving?

From the beginning of my diagnosis, I made it clear that I would fight with every fiber of my being.  And I believed that I had every chance to get through this, not just because my doctor told me how “curable” Hodgkin’s was, but because I was not going accept anything less.  This disease was going to be fought on my terms, me versus Hodgkin’s.

As was often the case growing up, dealing with playground bullies, I was often challenged by multiple bullies at one time.  I never understood this, as I was smaller in size than the majority of my classmates, so I was an easy enough target without being ganged up on.  But my cancer would treat me no differently.  It would take no time, before I was not just fighting cancer, but I would be surrounded by others who wanted a piece of me as well, for their own reasons.  And just like on the playground, it is hard enough to face one entity larger and more powerful than you, but to take on others at the same time, was not only unfair, not only made things more difficult, but only made my resolve stronger, resulting in this massive chip on my shoulder.

From day one, I did my best to minimize any loss of time from work.  I not only did this because I needed the distraction, a sense of normalcy in a time when I had lost all control of my life due to a “cancer schedule” I had to follow, but also so that any absence would not be put on the shoulders of my co-workers.  But it did not take long before some of my peers would begin whispering among each other that I was receiving special favors, though none were able to list any such things.  The funny thing is, again, unknown to my co-workers, as I have mentioned in previous posts, they ended up with better health insurance coverage because of what I was facing.  As time went on, and in spite of me missing ZERO, nada, zilch days from work for my 30 radiation treatments and 8 months of chemo, somehow, it was assumed that I had to be getting some sort of special preference from management.  I was not.  But having to deal with this petty jealousy often left me wondering did I do the right thing, remaining at work while I fought for my life.

Once my treatments were over, and I had grown tired of the harassment due to what I had just gone through, I made the decision to look for other employment, only to be faced with the prospects of discrimination.  It was devastating to hear the words, “we would prefer if you were in remission longer for us to consider you for hire.”  I would take this national insurance firm that I was applying to, to the Pennsylvania Labor Relations Board because I was definitely being discriminated against.  And that is when I learned about the new law, which admittedly to this day still has too many flaws and loopholes, the Americans With Disabilities Act had just been signed.  This company was one of the first to learn it needed to change its hiring practices.  They had me completing all kinds of trainings and certifications, interviews, and even a medical physical (which I passed), only to turn me away because I had cancer.  “Not any more,” said the PLRB.  “You must change your hiring practices that only upon consideration of hiring, in other words, you are good to go, pending a physical, and if you pass the physical, then you should be hired.”  In other words, I passed the physical because I had nothing wrong with me.  My cancer was behind me.

And then there was the day when I discovered the price I would pay for my remission of my cancer.

I cannot speak for other cancers, but at least with Hodgkin’s, there is this “magical 5 year mark.”  It is a milestone to consider being “cured”, to get health and life insurance, and well, statistics or survival are based on 5 years.  What this 5 year mark really means, is that science never really expected us to last past five years.  And what this means, is that science never really studied  what happens to a Hodgkin’s survivor after five years, as far as developing late side effects from the treatments that saved our lives.

Nearly eleven years ago, I found out one of those issues that I had developed.  Radiation damage to my cardiac system over the years nearly caused my death with a potentially fatal heart attack.  I had not been seen by a cancer doctor in over fifteen years, so no one was following this issue.  But as the cardiologist who diagnosed this issue told me, “it was not a question ‘if’ you were going to die, but ‘when'”.  The normal empathetic human being would be like “wow!  How scary!  Glad they caught it!”  But just as I found myself dealing with the self-absorbed concerns of my co-workers with my Hodgkin’s journey, I found myself in the same situation recovering from my emergency bypass surgery.  Co-workers were ridiculing my recovery taking so long.

The day after I was released from the hospital, I had begun to go on walks, as ordered for exercise.  Unfortunately I lived on a street that many of my co-workers traveled to get to work.  Yep!  They saw me walking, said I looked great and there was no reason I could not be back at work.  Forget the fact that my breast bone was split open to do the heart surgery, I “looked good” enough to go back to work.  To make matters worse, due to my radiation history, what normally would have been a 3 month recovery, radiation would cause healing issues, and with my physical job, it was recommended that I remain out 6 months.  But of course, co-workers who know more felt this was excessive.  Forget the fact, that many of my fellow survivors who have had this surgery, have actually had their breast bone “separate” needing to be re-set.

It was not bad enough that my co-workers had put pressure on me out of their jealousy, but even my employer got in on the act, threatening to terminate my employment if I did not return to work in a timely manner, but when faced with physical restrictions, while initially refusing, it was not long before I once again introduced an employer to the ADA, and that under this law, I was protected from the harassment and discrimination that I was facing.  But as I said, the ADA is flawed with loopholes, and that just mean more fights, one after another.

Once I realized the cause of my cardiac situation, I found medical care that specialized in long term side effects.  Of course the bad part about that, a Pandora’s Box if you will, many other issues were discovered that I now deal with:

  • cardiac
  • pulmonary
  • skeletal
  • thyroid
  • renal
  • gastrointestinal
  • immunity
  • muscular

There are more, but the list is daunting enough.  As everything has been discovered, it left me with more physical restrictions, and more jealousy from my peers.  I had also developed a very bad habit.  Since all of these issues were internal, invisible to the naked eye, only allowing people to see the outer shell of me, I unintentionally convinced people that there was nothing wrong with me.  Yet, every time I went to the doctor, I got the same doom and gloom reporting of how things have progressed, especially because of how hard I was on myself physically “just to keep others off my back.”

So, it soon became not just fighting others to prove I have these health issues, fighting to prove I need time to recover from injuries, even those closest to me soon were implying that these issues were not as serious as the doctors said.  A near fatal bout with septic pneumonia had me accused of trying to get out of going to work once I was released from work, in spite of doctors still saying I had the pneumonia in my lungs.

My daughters were not born yet when I went through my Hodgkin’s fight.  And they were too young to know just how severe my heart issue was eleven years ago, but they know it was serious, seeing me with all kinds of tubes coming out of me.  They witnessed me being rolled out of my home at 3am on an ambulance stretcher dying from pneumonia.  Now teenagers, they are being told of the many health struggles I deal with, still on their age level.  But there will come a day early in their adulthood, they will undoubtedly be charged with decisions concerning my health care.  Which means they will learn everything that I have dealt with over the years.  But make no mistake, my fight for survivorship continues for them.  I want to see them graduate, hopefully go to college, get married if they choose, and perhaps, even become a grandfather.  But I am fighting for that chance if they should give me that opportunity.

Today, I still have to fight others who still call me out.  I have even had some make comments like “it is too bad you survived.”  And just like all the others in my past, only a very few limited people besides my doctors know what my body is being put through.  I have had to “prove” myself time and time again in some of the most unexpected settings.  But this much remains, I WILL NEVER QUIT FIGHTING!

Do you see that?  I WILL NEVER QUIT FIGHTING!!!

Yes, 29 years of cancer survivorship is a big deal.  And hopefully by getting this “chip” out in the open, I can allow myself to get ready to really let loose and celebrate the big milestone next year, that I never would have thought I would see the day.  And yes, my Survivor’s Guilt is very real, and the reason it is so hard to celebrate these anniversaries.  I cannot grasp why I get to be here, and so many do not.  Those who were not able to be one of the most curable cancers.  Those who were unable to get the “survivorship” care necessary for these special issues that we deal with.  Those who were able to get the care, only to pass away from post-care following procedures.  Yes, I do ask “why me?”  A lot.

I never get that answer.  And because of that, I will never quit fighting until I see the day that everyone has the chance that I have had, longevity.

Coming up in a year… my 30th year milestone.

Post Navigation